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Jax7722

New member
Joined
Apr 6, 2017
Messages
5
Reason
Learn about ALS
Country
US
State
Ohio
City
Urbana
Hello,
Thanks in advance for listening to my story. I'm a 39 year old male. Nothing special. My sysmtoms started last November. I started twitching in my right leg above the knee. It lasted longer than normal and I chalked it up to allergies at first. It started all over my body. Then came the buzzing and vibrations. So I used Dr. Google and have been scared to death ever since. I went to the Dr. He first thought resestless leg. My wife told him I move around a lot and he did a sleep study on me. He found out I had sleep apnea. Put me on a cpap said this should calm your twitches. This didn't help as I started thinking about bulbar onset. I asked him about ALS and he tested me and said I responded fine. I asked him sent me to a neurologist.
I then went to the neurologist who did an EEG, MRI and a Spine MRI. The Spine MRI found I had a herniated disk in my neck the other tests we clear. I thought this was the cause of my problems and felt better about it. At this time the buzzing and vibrating have stopped and the twitches have slowed down. I have no weakness or atrophy that I can tell. My reflexes are jumpy. I went to a secon neuro. He tested me told me my reflexs are jumpy because of my nerves. I passed his physical exam. I go for an EMG May 12. Still scared.
 
I'm not seeing ALS in your future. First, the twitches could be anything, or nothing at all. Twitching is so common to many conditions it is not diagnostic of anything. Healthy people twitch.
It sounds like each doctor is giving you tests pretty much at your insistence.

I see no reason to be scared. Your odds of getting ALS are just like any other healthy person.
 
I see nothing here to be worried about. You have improved your health by starting the CPAP, so I'd count that as a win.

Best,
Laurie
 
Thank you for your feedback and time.
 
In the last few days I've had jaw pain and my skin felt numb are these possible symptoms. May 12 is a long time away.
 
Plus I seem to have a cough that of and on for the last 3 months.
 
One more question. I have had trouble sleeping at night. Noticed on my CPAP that I have more Hypopnias is this a sign of The big bad? The number is 1.2 on the ahi for 6 hours of sleep
 
In every post, you say nothing that could possibly be ALS.
 
1.2 AHIs is within the normal range so the CPAP is adequately correcting your apnea. But for more refreshing sleep, it's always wise to reconsider your bed setup, a humidifier (which your CPAP should have, if not) and your room heat. A low-voltage mattress pad may be helpful so you can stay warm and breathe less dry room air.
 
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